 What and why is phantom pain and phantom sensation? Is it just all in your head? Does that mirror trick, mirror therapy actually work? What does phantom pain actually feel like? Does it ever go away? Does ever amputee have it? We will be tackling these questions and more in today's video. Wiggling my toes right now, can't you see it? Hello there, my beautiful, lovely, talented and delightful internet friends. Welcome back to my channel. Thank you so much for joining me here today on Footless Joe, where I am still Joe and I am still missing a foot, even though it looks like I found it. I promise you this is not the one I was actually looking for. And today, we are gonna be talking about one of the most fascinating aspects of being an amputee. And by fascinating, I also mean kind of really frustrating, infuriating, but also really interesting. And that is phantom sensation and phantom pain. Chances are, if you were like most people who talk to me, you've heard about this on Grey's Anatomy. People ask me all the time, if I've watched Grey's Anatomy, have I heard the episode about phantom pain? Did I try the mirror trick? And I will be answering all that and more in this video. This is everything you have ever wanted to know about phantom pain and phantom sensation. I hope I cover everything. If I didn't, you let me know in the comment section down below and I promise you I'll do my very best to answer your questions. So just a couple days ago, I had the honor of being interviewed for a high school thesis paper on phantom pain and phantom sensation. As I was answering this lovely lady's questions, hello Laura, by the way, I hope you're doing well. It reminded me how weird this whole thing really is and I wanted to share some tidbits about it with you guys today. As I know it is a topic a lot of people are interested in hearing a little bit more about. As we dive in today, I would like to give a huge thank you and shout out to all of my patrons over on Patreon who supported this video today and make videos on this channel possible if you are interested in joining our Patreon community. I will tell you that there's a new exclusive video that went live just yesterday on my Patreon. But if you're interested in checking that out, link on screen and also down below. While you're here, if you wouldn't mind hitting that subscribe button, maybe that like button, maybe ringing that notification bell so you can see more of my videos pop up in your recommended feed. That would be fantastic. And now let us dive into the topic at hand or should I say the topic of foot? Get it? I promise no more bad puns for the duration of this video and yes, I might break that promise. I wanted to start by talking a little bit about what phantom pain is and then I'm gonna share a little bit about my experience and we're gonna answer some weird questions along the way. One of the first questions people ask me is, is phantom pain actually real? Like is it just all in your head? And my answer is it actually is all in your head because everything we experience, every kind of sensation we experience comes to us from brain signals. And what phantom pain and phantom sensation is, is your brain trying to send signals to a part of your body that isn't there anymore. Now, I am not a scientist. I will not be able to describe this in scientific terms. I have placed a couple of articles in the description down below if you are interested. But basically when you are born, your brain has a map of where your body parts are. It's how we know how to do this. It's how we realize where our body parts are in relation to our body. However, when a body part is removed from the equation, that map in your brain of those body parts doesn't necessarily get the message that that part is no longer there. And so it keeps trying to connect to it. It keeps trying to send signals. And when those nerves fire, it can produce some really uncomfortable or weird sensations. Sometimes it feels like itching. Sometimes it feels like intense pain. The skill varies really broadly when it comes to what kind of pain and sensations an amputee might experience. But to answer the question there, it's very real pain, it's nerve pain. And unfortunately nerve pain can be pretty difficult to treat. So then all amputees probably experience phantom pain, right? I was surprised to find out the answer is no. I actually have two friends who are both below the amputees and neither one of them have ever felt phantom pain. And I'm just like, how? I'm so happy for you, but how? Because I definitely, definitely experience it. How each individual body reacts to amputation is different. So some people get it really, really badly to a very disabling extent. And some people never feel phantom pain at all. I kind of fall in the middle of the spectrum. So while we were on the topic, let me share a little bit about my own personal experience with phantom pain. So one of the biggest concerns I had when heading into amputation was phantom pain because it's unpredictable. Because like I said, it affects people in different ways. You have no way of knowing what you're gonna feel after amputation and how severe it's gonna be. So the pain I was having before amputation was really bad, but there was no guarantee that the pain from phantom pain was gonna be any better. But we took an educated risk and educated guess and did the amputation. So when I woke up from my surgery, I can tell you this, from the very moment that I woke up from amputation to present day, I have always felt my foot. I can tell you right now, I'm wiggling my toes. You can't see it, but I'm definitely wiggling my toes. They are somewhere up in body part heaven and I'd like to think they're wiggling back at me. That might be too weird of a joke to leave in the video. Wiggling my toes right now, can't you see it? From that moment of waking up, the sensation of my foot being with me has never left. One of the best ways to describe it is if you take a moment and you close your eyes right now and you wiggle your sets of toes, however many you may have, that's what it feels like, right? Like, I just can't see it, but I can feel it. I can experience that it's still there, even though it's gone. Now, the first couple weeks after amputation surgery, I didn't feel a lot of phantom pain. However, once phantom pain did start up, I think it was about a week or two after amputation and started up with a vengeance. I started feeling electricity, like really painful electricity, like as if someone was sticking a cattle prod to the bottom of my foot. And I remember days of being on the couch, feeling like I was losing my mind because I was quite literally the sounds dramatic, but like writhing in pain. My husband can attest to this because I was being shocked over and over and over and there was nothing that I could do about it. Now they did put me on a nerve pain medication for phantom pain called Gabapentin, but unfortunately that didn't seem to do much for me. There's a second one people often try called Lyrica, also didn't do too much for me. So unfortunately there wasn't a whole lot I could do aside from like grit my teeth and bear it and hope to God that it went away. But I also did start doing mirror therapy, which we will talk a little bit more about here in just a second. But what I can tell you is that that first few weeks of phantom pain was agonizing, but thankfully over time it did dissipate and it's kind of gotten to the steady level of I get a lot of electrical feeling pain. Sometimes I'll feel like someone is cutting the side of my foot open, which is one of my least favorite sensations. Honestly, the one that I hate the most is feeling like in between my toes are being paper-cutted. Don't ask me why that is what my brain has decided to come up with, but it is so weird and uncomfortable because first of all, I've never gotten a paper cut on my foot, but it feels like someone's just sliding a piece of paper in between my little toes that aren't there anymore. So for the past two years or so, phantom pain has been pretty steady and my phantom sensation, that being the feeling that my foot is still there that I can move my toes, or even things like someone touching my foot or itching have existed every day. A lot of amputees who do experience phantom pain and phantom sensation will tell you that the itching is one of the most crazy making things because there's nothing you can do. Like imagine having an itch on a part of your body that lasts for hours and you can't touch it. Like that is torture right there. I've had it last for like hours a couple times and I'm like, oh my God, I am going to lose it. Thankfully, it does eventually go away. Now there is one other thing that they tried for phantom pain and phantom sensation for me and that was a TMR procedure that stands for targeted muscle re-innovation where essentially, again, not a scientist, not a medical professional, they embed your nerves into your muscles so that they have something to fire into and the risk of neuromas forming is a lot less. A lot of amputees have said that this completely cures their phantom pain and other ones such as myself, it doesn't do a lot for. When I had my second amputation surgery because the first one ended up not going well because of a fall, I had to have another couple of inches taken off my leg. While they were in there doing that surgery, they thought we might as well give this a shot as well. Unfortunately, it did not do too much for me but I'm grateful that that surgery exists and it happens to help a lot of amputees who have a really hard time with phantom pain. And if you are around me long enough, you'll see me being in conversation, being animated and talking with you and then all of a sudden just being like, because someone in the afterlife of my foot has decided to start shoving a kettle prod against it and I feel that and it's very painful and it usually only lasts 10 to 15 seconds and then it goes away. Occasionally, I'll get like phantom pain tax where it keeps going off for a few minutes and it's really frustrating and painful but again, it doesn't tend to interrupt the course of my day, it lasts for short enough periods that I'm able to just grit my teeth and bear it, get through it and then go on with my day. So let's talk a little bit about the question that everyone seems to want to know. Does mirror therapy work? Have I tried the mirror trick? Most people who ask me this are like, have you watched Grey's Anatomy? Did you try the mirror thing? And I'm like, I think you're talking about mirror therapy and yes I have. So mirror therapy is one of the most bizarre and fascinating things and I couldn't tell you why it works but I can tell you that a lot of amputees have a lot of success with it and I happen to be one of those amputees. When I started experiencing phantom pain to a large extent in those first couple weeks after my amputation surgery, I got a big mirror and I started trying this out. Now mirror therapy is essentially where you place a mirror in my case in between your legs and you look into the side of the mirror where your remaining leg is and you're able to suddenly see that you have two legs again and you start making movements with your good foot and moving your ankle around, maybe moving your toes and watching your other foot, your other leg that you can now see in the mirror, your brain now sees you have two legs and you make these movements and for whatever reason this can be therapeutic to your brain. For instance, if you are having a bad itch on your phantom foot and there's nothing you can do about it because it's not there anymore, you could try putting a mirror up and looking into the mirror at the foot that's itching and scratching your remaining foot and it looks like you're scratching your phantom foot. Some people experience relief by doing this. However, practicing mirror therapy over time, doing it a couple times a day for weeks was really helpful to me. I thought it'd be like immediate relief from pain. It's definitely not. It took a while to set in. I'd practiced just making little movements in the mirror every day for quite some time and eventually it helped. I don't do mirror therapy too much anymore because like I said, it's kind of at a manageable level and I haven't seen a whole lot of improvement by doing more mirror therapy but it's something that can be really beneficial to people. I would love to know more about why it works. If there are any articles I find about that I will also link them down below. So let's pause for a moment and go back to phantom sensation. I explained that I can always still feel my foot as if it was a real foot that was still there but one of the weirdest things to me is that as time has gone on I can still move my toes. I can still move my ankle but it feels like I'm moving through like wet cement or mud. Like it feels like everything is just so slowed down. Like if normally I could just like move like this it's like just barely moving. Like I can make it move but it takes effort to do so. One thing that was really interesting to me about phantom pain is that it does not mimic what I was previously feeling. For instance, the pain that I had in my ankle from all of those surgeries of my initial accident and all of that I wondered if maybe because I had felt that pain for so long if those pain pathways had been created in my brain and if I would then feel phantom pain in my ankle in those same places very glad to report that it's not been the case for me. I don't feel ankle pain anymore except if I'm feeling like phantom cramping or something like that but I don't feel the same kind of pain that I experienced previously. Okay, so I need you to bear with me for this next part because I know it sounds super weird but I promise you it is true. The most bizarre thing about having phantom pain and sensation is the fact that sometimes real movements and actions can be felt. What I mean by that, if I am looking at my prosthetic foot here and I drop something on my toe or someone touches my foot, I feel that for a second. Like if I visually see it, if I'm looking at my foot and something happens to it even when it's this plastic foot I feel the actual sensation that I would have felt had my real foot been there and my darling husband Brian knows this so the other day I was sitting in my office with my feet up on my desk because I'm a monster and I have no respect for my furniture and he came in and he grabbed my big prosthetic toe and I was like, babe, I can feel that. You know I can feel that and he's like, yeah, I know. It's such a bizarre thing. I've had a friend give me a foot massage before just to see what I could feel and I can feel parts of it. There's something about our brains and anticipating some kind of sensation where if we expect to feel something we end up feeling that and I have also felt this when I've stepped in weird ways that previously used to give me a lot of ankle pain and I feel like that movement is similar. I'll feel like a flash of that old pain for a second before my body kind of catches up and realize like, oh, it's not there anymore. It really makes me wonder about the nature of pain and how we experience or feel anything when I can feel something just because my mind thinks that I should. It's absolutely fascinating. Something I would love to learn more about but I would definitely say the weirdest thing about phantom pain and sensation is the fact that, yeah, if someone steps on my toes I feel it for a second even though I can't technically feel it. Bodies are weird. So there's only been one thing I've been able to find that actually makes phantom pain worse or really triggers it and that's if I put my leg on in some kind of way that must be pushing on a nerve that doesn't want to be pushed on. There have been times when I like put my liner on and all of a sudden I am in like a ton of this crazy electrical pain and I have to rip it off really quickly and then it's fine. It's like that nerve gets irritated, agitated or pinched or something like that and I feel all of that and then it goes away. But aside from that, there's been no way that I've found to predict when I'm gonna feel phantom pain to know what makes it worse, to know what makes it better. It really is kind of random. Some days I barely feel anything. Some days I have these phantom pain attacks that last for a long time. Does phantom pain or phantom limb sensation get better over time? Different people have reported different experiences with this. I can tell you that for me it hasn't, it hasn't resolved at all. It's been pretty steady. But for some people they have phantom pain for a little while and then it completely dissipates. It's like your brain adjusts. Hopefully one day my brain will but it's entirely possible that I'll feel this for the rest of my life. However, compared to the pain that I was in before amputation, I will take this kind of phantom pain any day. And there we have the definitive guide to phantom pain and phantom sensation. I hope I answered most of the questions that you might have in your head. These were a lot of things that I wondered about. If you have any questions, like I said, please leave them in the comment section. I will do my very best to answer as many comments in the comment section as possible. And maybe if I forgot enough things that you're interested in hearing about, I'll make a second video addressing more in the world of limbs that don't exist sending you signals. For the record, I also think it's entirely possible that we are still connected to our amputated limbs. And there's someone up in severed body part heaven that just keeps stabbing and cattle prod to the bottom of my foot, which is very unkind of them. And that's why I feel phantom pain. But scientists would disagree. But I mean, what do they know, right? They've only spent their whole life studying this. It is really odd that when you get rid of a body part that's been giving you trouble. In my case, of course, there are many other reasons for amputation that you still feel it. And almost seems kind of cruel of your brain, even though I realize that cruelty is not involved in our biology and physiology and how we work. But it does seem kind of cruel that your body's like, no, even though it's gone, I'm still gonna make you feel it. But I do not dictate how nerves work. I just live at the mercy of them. Thank you for hanging out with me today and learning all about the wondrous world of phantom pain. Not quite wonderful. It's a little weird, it's a little uncomfortable. But it is really fascinating, isn't it? I really appreciate your time and spending a few minutes out of your day here with me today. You could be anywhere in the world doing anything else. And you chose to hang out with me for a few minutes and I truly appreciate that. Also, a huge thank you to my patrons again for making these videos possible. I love you guys. I am so eternally grateful for your generosity. Thank you. I love you guys, I'm thinking about you and I'll see you in the next video. Bye guys. And her from the sky.